Because I have readers that are parents of Aspies, I’ve been insisting that my mom write something for you. She went through some of the same things that you have gone through and/or may be going through at the moment. I always like talking to my mom about my Asperger Syndrome. She’s understanding, patient, and kind. She let me read what she wrote before I sat down to write this. It made me cry. It makes me wonder if I will have the same concerns. That is, if one or more of my future children ends up having AS. I hope you enjoy reading what my mom wrote and I hope that this is a help to other parents of Aspies.
Glow In the Dark Sticks
One particularly frustrating night that had me in tears, led me to great understanding. It’s always darkest before the dawn, right? When an aspie is very young, particularly girls, you may not even realize you have a need for diagnosis; girls can be so verbally articulate at such a young age compared to most boys. There is so much that can be explained away with the phrases, ‘She’s young…she’ll grow out of that behavior’ and ‘She’s just kind of quirky that way.’ The latter statement can be made for everyone, at every age, however, after a certain age; you just can’t make that first statement anymore. THEN WHAT?
A little history;
When your three week old is inconsolable and you have done everything you can think of to help, such as: change, lullaby, feed, rock, walk, bounce, etc. and absolutely nothing is helping, THEN WHAT? You decide that she’s just going to have to cry it out in her basinet. So, armed with your steely resolve to make it through the seemingly endless screaming you are about to hear; you put her down and the weirdest thing happens…she gets this look of utter relief on her face, as if to say, “Finally. Thank you. It’s about time!”, and with that, she turns her tiny face to the side and is asleep in no time, probably before you have even left the room. She just didn’t want to be touched anymore, you might say, she was “all touched-out.” Welcome to the new “normal” for all naps and bedtimes to come.
When the family is all dressed and ready to go, loaded in the van, arriving in the church parking lot, you get out and open the slider door to unload the kids and discover your 18 month old is now completely naked AND still strapped into her car seat, so you ask, “What…why? You’re naked…why are you naked?” To which she replies, “I don’t wike my socks!” You say, “But, you took it all off, Houdini! Why?” And she states, “Itchy!” as she pulls her hair out of the tidy little pig-tails you had so precisely done half an hour ago. THEN WHAT? It dawns on you, over time, that you will have to start padding your departure/arrival time so that you can accommodate these frequent naked episodes until you have eliminated all the offensive clothing from her wardrobe and still have time remaining for her to stop, plop-down anywhere she sees fit, removing her socks and shoes so that the seams of her socks can be remedied. Welcome to the new normal of getting places on time and fully dressed.
When all the kids are being loud, including your as-of-yet undiagnosed aspie preschooler and she asks you to make the others be quiet because they are hurting her head, you logically point out to her that she is being just as loud and perhaps she should be the first one to quiet down. To which she responds with holding her ears, rocking back and forth, yelling at them all loudly, “BE QUIET! BE QUIET! BE QUIET!” with tears streaming down her very red, little face. Eventually, they all just reluctantly quiet down and look at her, then look at you and complain, “Mommy, she was loud too!” You raise your hands and shrug your tired shoulders and say, “I know, I know…I think we could all do with a little bit of quiet now, huh?” THEN WHAT? Trips to the grocery store, mall, amusement park; anywhere noise (even fun noise) happens, usually ended with this kind of silent confusion. Welcome to the melt-down mystery I could never solve…can I get a witness?
I could go on and on about stories involving food textures that gag, socially taboo statements and behaviors, as well as how she would get up in the middle of the night at 4 and 5 years old to remake her bed because the wrinkles in her sheets had woken her up; but many of you have likely already lived these stories. I have a different story in mind. She was at school, having ‘one of those days’ where many an inappropriate statement was made by her. She was out on the field during lunch with a group of kids, one of whom apparently had anger management issues. One person with AS and another one with anger issues is a very dangerous combination. My daughter said something that triggered this boy’s rage and in seconds, he had her up, off her toes…by the throat! THEN WHAT? Then you worry, every time she walks out the door without you. Will she?…fill in the blank with whatever she has been doing of late. Will someone else?…fill in the blank with whatever your greatest fear is at the moment. That is to say, you worry until you can put it all together and recognize trainable moments. You talk together, and you teach, reducing the fear that it will happen again. You realize your child is not on the same timeline for learning the skills that give personal freedoms, such as walking places unaccompanied as other children do. You come to realize that there is nothing wrong with that. What’s our hurry, as a society, to make every child fit the same mold? Our personal convenience, I guess. You seek God and all His wisdom, asking Him to show you great and mighty things that you can not know on your own. And you rest in the knowledge that He is faithful to do just that. In time and over time will come digestible bits of wisdom and comfort to help you, your daughter, and all who love you and your daughter.
Together you all make up a community for her that works. There will always be those who choose to not understand or believe it’s not real. They choose to not be a part of your community. It’s okay, I’m sure they have their own issues and this just doesn’t happen to be one that is close to their heart. Some of those people may even be reading my daughter’s blog. If you are, and you know that you are, it’s okay. I release you from having to be involved. Life is too short to force unwilling participants into your community. I would rather spend time with those who have a heart for it, wouldn’t you?
You are asking why my contribution to my daughter’s thoughtful blog is titled Glow in the Dark Sticks, aren’t you? Well, I have decided that discovering my daughter’s AS is like having a glow stick. There are so many conditions in this life that can bring a heart-breaking diagnosis of a life that will be stopped too short, or a lifetime on medication that alters the person you love into someone you hardly recognize, or a condition for which the treatment sounds worse that the condition itself. For a long time I was dismayed and frustrated and from time to time, my heart ached from a lack of answers to a question I did not know how to articulate; then I experienced the day that I wrote of in my first paragraph. Something in me snapped that day; I was talking to myself over this frustration and said to myself, out loud if I recall, “It’s like she has social dyslexia!” Social dyslexia! What a concept, I ran to the computer and typed social dyslexia into a search engine. Up popped a million links to websites dedicated to Aspergers Syndrome and/or The Little Professor’s Syndrome. I was up all night reading. That day may have been the straw that broke the camel’s back (read: snapping the cylinder inside a glow stick) but it shed light (like a glow stick) on a subject that I have grown to see as having a lot of positive sides to it. Not at all like having a broken heart…more like having a glow stick.
To the sky and back.
I will always have a special place in my heart for you. Thank you for intervening that day. I will always be grateful that you and others like you are a part of our community for Allison.